What does your doc do for rises in ANCA/PR3?

[crowneagle]

My doc doesn't track either ANCA. My monthly labs are complete blood count, comprehensive metabolic panel, sed rate, C-reactive protein, and urinalysis. We track creatinine within the cmp for kidney function. Creatinine runs slightly above normal, but it's stable, so we recognize that there's some kidney damage, but we don't worry about it.

Ditto for me. Have you tested positive for MPO or PR3?

[txrepub4God]

My ANCAs have been checked probably 5 times in the past 2 years - but I requested (and my rheumy agreed) to have my PR3s checked every single month with all my other labs. I think watching the PR3 helps both you and the rheumy know if your treatment plan is working or not and if your Wegs is still active (and how active it is). My cANCA was only positive one time, about a year ago before I was diagnosed. However, my PR3s are ALWAYS abnormally high, and even though they came down some on Cytoxan, they never got into a normal range. I was just taken off Cytoxan after 5-1/2 months on it, although she was going to take me off at 6 months anyway. It ended up causing severe internal bleeding from my bladder (called hemorrhagic cystitis) and I was hospitalized for 11 days, given 6 units of blood & platelets, got sepsis, was in the ICU, and nearly left to meet God. Let's just say I'm never taking Cytoxan ever again. LOL

I personally like to watch my PR3s for my own peace of mind and knowledge. At the moment I am switching rheumys and am not on any Wegs treatment except for a low dose of prednisone, since my new hematologist is trying to get my blood cell counts stabilized. My hemoglobin and hematocrit, as well as white blood cells and platelets, are now falling again since being out of the hospital for 2 weeks. I might have to go back next week for another transfusion.

[csjknits]

Thanks for the additional responses.
My PR3 has been positive since I was diagnosed. It was very high at diagnosis, got almost to zero (I think 6.6 at lowest?) and is now over 120. I guess the question is what one does with this knowledge. Everything else is good in terms of lab work. Creatinine has remained stable since July with one small blip that was likely either a small cold or dehydration (it went right back two days later). My CRP is normal and has been for a long time. My SED rate is up now, between 40 and 50, and rheumatologist wants eyes and ears checked (eyes are fine, ears will be checked this week). White blood cell count has been the same for a long time. Urinalysis is vastly improved and now shows almost no RBCs and the same proteinuria that has always been there (and my doc says this could be true for a while, he's not worried). I am on azathioprine now and I guess the only thing that could change would be to switch to Rituxan, which is possible but I"m not sure necessary at the moment.
I actually feel pretty good, minus joint pain. I do not want to go any higher on my prednisone, even though I know this would get rid of the joint pain.
I'm seeing my new rheumatologist in Jan and my WG doc/nephrologist in Feb. Going to ENT this week to check sinuses/ears/nose.
I am returning to the idea of going to Cleveland Clinic, which I had put aside for a while. Mostly just to see what their opinion is, as, like I said, I feel pretty good.
I guess what I am mostly curious about is how much people's PR3 fluctuates and what your doc does when it is high.

[gilders]

Azathioprine can take quite sometime, but has usually worked very well for me.
So as your not feeling too bad, I'd wait for the Aza to kick in before looking at more powerful treatment.

[txrepub4God]

I guess what I am mostly curious about is how much people's PR3 fluctuates and what your doc does when it is high.

My rheumatologist didn't change anything when she saw that my PR3 wasn't going down or getting anywhere close to a normal level. She just used the monthly PR3 test to see how effective the current treatment plan was, which for me was Cytoxan 150 mg daily, 10 mg prednisone daily, and 400 mg Bactrim daily. I think she planned to have me on Cytoxan for 6 months all along and that's it - she was going to switch me to Imuran or CellCept after 6 months. However, I got so ill on the Cytoxan that we stopped it a few weeks early and right now I'm not on anything except prednisone until I find a new rheumatologist.